Endometriosis is a condition where the tissues and cells that line the uterus (the endometrium) are found outside of the uterus, and follow the body’s menstrual cycle. As the uterus lining sheds and breaks down the cells found elsewhere in the body also break down, causing blood to empty into spaces within the body, onto organs and tissue. This creates inflammation, scarring, adhesions and pain. However, both the pain and the disease itself are not completely linked with periods. Many women find that they suffer from symptoms and pain throughout the whole month, and endometriosis can continue after a woman has gone through the menopause or is not experiencing periods.
Endometriosis is usually classified into the following four stages:
Stage I – minimal endometriosis with isolated implants and no significant adhesions.
Stage II – mild endometriosis with superficial implants of less than 5cm and no significant adhesions.
Stage III – moderate endometriosis with multiple implants and scarring around the tube or ovaries.
Stave IV – severe endometriosis with multiple implants and scarring, including large ovarian endometriomas with thick adhesions.
The stages of endometriosis are typically classified by the location, amount, depth and size of the endometrial tissue – but the stage does not necessarily directly correlate to the levels of pain experienced, risk of infertility or the symptoms presented.
The following list of symptoms are a general guideline of those experienced by women diagnosed with endometriosis, but will vary from person to person. Some women are asymptomatic – they show no symptoms.
Irregular periods
Painful sex
Chronic fatigue
Bladder frequency and/or pain when urinating
Painful bowel movements
Digestive problems, including IBS
Back/leg/pelvic/abdominal/joint pain between or during periods
Abnormal or heavy menstrual flow
Period pain that can stop you from doing your normal activities
It can be difficult to get a diagnosis of endometriosis because the symptoms can vary so much, and there are many other conditions that can cause similar symptoms. Many women experience symptoms that are exaggerated forms of those caused by a healthy menstrual cycle i.e. the bleeding and period pain, and if this is how their periods have always been then they may not seek medical attention for some time as they believe it to be normal. Currently there is a campaign being run by Endometriosis UK to teach more about menstrual wellbeing in schools so that diseases like endometriosis do not remain undiagnosed for as long. Endometriosis cannot be diagnosed through tests or scans, as it is very easy to miss on the scans and cannot be picked up by any test. The best way of diagnosing it is by having a laparoscopy, which your consultant will refer you for. During the laparoscopy three small incisions will typically be made, your abdomen will be filled with gas and a camera will be inserted so that the surgeon can look for any presence of endometriosis. In the UK, if they find endometriosis during this surgery then, if it is safe to do so, they will remove it.
Currently there is no cure for endometriosis, however there are a variety of treatments that can be used to control the symptoms. Unfortunately, endometriosis is still very misunderstood by the medical community which is mainly due to the lack of research that has been conducted.
During a diagnostic laparoscopy, if endometriosis is found, it can be removed using heat, a laser, electric currents or helium thermal coagulation (Helica). Further laparoscopies may be needed as endometriosis can grow back after being removed. A laparotomy may also be used, this is open surgery rather than keyhole surgery and an incision will be made across your bikini line. If this is the chosen operation method, your gynaecologist will explain their reasons for choosing this method.
Pain relief can be used to help with some of the symptoms, most doctors will prescribe anti-inflammatories such as ibuprofen, naproxen or mefenamic acid.
Hormonal treatments, like oral contraceptive pills, are also commonly used by doctors to restrict the production of oestrogen in the body. Endometriosis is thought to be an oestrogen dependant disease, and many doctors believe that those diagnosed with endometriosis have a hormonal imbalance known as oestrogen-dominance. Limiting the oestrogen can reduce the amount of tissue growth, but it will not have an effect on adhesions or tissue that has already grown on organs.
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